I hope to get this therapy , my lupus has severely damaged my lungs, I would love to take my life back ❤🎉
@alfridacara15024 күн бұрын
Hi how about Friedrich ataxia type 1 im almost 20 can i cure or treat well with stem cell therapy, exosomes and miRNA?
@kaleidoscopefightinglupus2 күн бұрын
Hi, we haven't found anything specific to CAR T cell therapy yet, but there is quite a bit of other kinds of gene therapies being studied. Here is a relatively recent article describing several. I can't claim to understand most of them, but it seems like this is an active area of research and you might want to print it out and ask your healthcare provider about these. We hope this helps! link.springer.com/article/10.1007/s40263-024-01113-z
@manuelvas7 күн бұрын
nice
@jenniferchunilall771022 күн бұрын
Praying foe a cure for lupus..God can still perform miracles..pls update n make its public
@speakup733Ай бұрын
Exciting, wondering if there are any updates on this.
@kaleidoscopefightinglupusАй бұрын
Thanks for viewing this video and the comment! As you can imagine, things are changing quickly in this area of research and therapy. The recent American College of Rheumatology Convergence in Washington DC in November had a large number of updates and we will be getting this information out as quickly and responsibly as possible. Let's just say, "Watch this space!" Until then, here is a quick overview from the ACR: www.acrconvergencetoday.org/experts-to-explain-why-car-t-cell-therapy-is-promising-but-not-a-cure-all/
@speakup73323 күн бұрын
Thank you.
@kaleidoscopefightinglupus2 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GOR2I0GSVS2237980&mcm=60003
@yassirmohammad84953 ай бұрын
It's amazing that there's a curative treatment of a chronic disease like lupus
@kaleidoscopefightinglupus3 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by using the QR code or following this link: www.usinlupus.com/?cc=prnt_GO...
@kaleidoscopefightinglupus4 ай бұрын
Today, Dr. Thomas, who is the featured presenter on this video, is undergoing serious open-heart surgery and we ask everyone in the global lupus community to keep him in your hearts and prayers for his health and successful recovery!! Dr. Thomas has been a skilled, energetic and generous advocate for lupus patients everywhere, and we have been honored to work with him for many years now! Here is a link to his Lupus Encyclopedia Facebook where you can find out more from Dr Thomas himself: facebook.com/LupusEncyclopedia
@kaleidoscopefightinglupus4 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@WFPB_4_Life5 ай бұрын
Thank you for sharing this valuable info. I hope all rheumatologists share this research about avoiding probiotic supplements with their SLE patients.
@westonhuffman79085 ай бұрын
Well, I wanna get a fecal microbiome transplant.
@kaleidoscopefightinglupus5 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@kaleidoscopefightinglupus5 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@kaleidoscopefightinglupus5 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@kaleidoscopefightinglupus5 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@kaleidoscopefightinglupus5 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@kaleidoscopefightinglupus5 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@kaleidoscopefightinglupus5 ай бұрын
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
@dennisembo45627 ай бұрын
Miranda is a walking encyclopedia of physiology. Part of what I enjoy about doing her Classical Stretch workouts is to hear her explain how the body works when it moves. I get to move along with Miranda and attend anatomy class at the same time! 😆
@lighto9997 ай бұрын
Great talk! How did the anti-SSA antibody patient on cd19 CART benefit from therapy, if they did not have reduction in anti-SSA antibodies? (28min mark)
@DonaldThomasMD6 ай бұрын
@lighto999 the immune system is in lupus is much more complicated than one particular antibody. Although anti-SSA can actually lead to inflammation (like insensitivity and fetal heart block), its presence may just be a marker of activity and not necessarily active damage or inflammation. The patient was in drug-free remission the entire time after treatment. However, the question is ... will this person's SLE be more apt to return than in someone whose antibodies all disappear? I suspect it will come back, but we will have to wait and see.
@lighto9997 ай бұрын
Hi, Great video. Does Dr. Donald have an opinion on CD19 antibodies or CD19 T-cell engagers? I know CD19 CAR-T has most data, but may be restrictive to patients. thx!
@DonaldThomasMD6 ай бұрын
My main fear is that B-cell depletors (like anti-CD 19 and anti-CD 20) have led to horrible vaccine response rates and increased deaths from COVID (even recently one of my rituximab patients died of the most recent strain). CD-19 CAR-T patients still respond to vaccines. You are correct, it will not be one size its all. We need to figure out who will respond best to which cellular targets. I foresee this field really exploding quickly over the next few years with more and broader research.
@lighto9996 ай бұрын
@@DonaldThomasMD Thanks for the reply! Do you have a hypothesis why B-cell depleters (CD19,20) lose vaccine response, while CAR-T does not?
@shalevsaada75967 ай бұрын
I have a question How does the b cells come back after 90 days if cart cells are still in the system trying to eliminate them
@DonaldThomasMD7 ай бұрын
CAR-T programmed cells attach to and kill only cells for which they recognize . More mature B-cells have CD-19 molecules on their surface so they are all destroyed. However, the most immature cells in the bone marrow that can become mature B-cells are still present and they reproduce, repopulating the body with important B-cells to fight off infections. However, so far, they are not producing bad lupus antibodies like anti-dsDNA. That is why the scientists call it "resetting the immune system." However, cells producing anti-SSA are still alive, probably the most mature B-cells called plasma cells, so we have a lot to learn. Also, could the immature cells that do not contain CD-19, could they become abnormal again, producing bad lupus antibodies? Only time will tell as we follow these patients over time.
@kaleidoscopefightinglupus7 ай бұрын
HI, we asked this question of Dr. Thomas and here is his answer. "The CART T programmed cells attach to and kill only the cells for which they are designed to recognize - the more mature B cells that have CD-19 molecules on their surface. So they are all destroyed. However, the most immature cells in the bone marrow that can become mature B cells later are still present and they reproduce, repopulating the body with important B cells to fight off infections. However, so far, they are not producing bad lupus antibodies like anti-dsDNA. That is why the scientists call it 'resetting the immune system.' However, cells producing anti-SSA are still alive, probably the most mature B-cells called plasma cells [which are not all killed off]. So we have a lot to learn. Also, could the immature cells that do not contain CD-19 become abnormal again, producing bad lupus antibodies? Only time will tell as we follow these patients over time." Thanks for asking this question!
@shalevsaada75967 ай бұрын
@@kaleidoscopefightinglupus thankyou very much. A very dear person of mine have bad lupus. This can save her
@kaleidoscopefightinglupus7 ай бұрын
@@shalevsaada7596 Good luck to her!!
@JovanaAna-mt9jm7 ай бұрын
Thank you!
@kaleidoscopefightinglupus7 ай бұрын
Thank you! Share it with anyone else you might think could use this information.
@anilamulla18038 ай бұрын
What about RA
@kaleidoscopefightinglupus8 ай бұрын
Hi, cancer treatments are still the most common use of CAR T cell therapies, but there is some research for RA. You can find out more from the NIH here (scroll down the page): www.ncbi.nlm.nih.gov/pmc/articles/PMC10328598/ We hope this helps! The KFL Team
@anilamulla18038 ай бұрын
@@kaleidoscopefightinglupusThank you
@DonaldThomasMD7 ай бұрын
There is also a study in RA patients that did well. At the moment, the number of studies and treated patients is really growing... it is an exciting time for possibly better therapies for autoimmune disorders
@user-dude-t8j8 ай бұрын
What a great talk! Thanks!
@kaleidoscopefightinglupus8 ай бұрын
Thanks for your comments; glad you enjoyed it! Please, share it with everyone you know.
@LoriZ-y8p9 ай бұрын
Very informative. Thank you
@kaleidoscopefightinglupus9 ай бұрын
Since the video taping (as of April 2024), additional data have been published, and at least 43 SLE patients have been reported treated with CAR-T cell therapy. Almost all developed mild, easy-to-treat cytokine release syndrome (most common symptom was fever). Therefore, Dr. Thomas retracts his statement in the video regarding Novartis' CAR-T therapy. Thus far, their results appear to have similar safety and efficacy as other products). Updated report can be seen here: www.lupusencyclopedia.com/car-t-cell-therapy-for-lupus/
@scores718 Жыл бұрын
Today i noticed hair on my legs and arms completely gone. Scalp ok even thicker than usual. Any comments? f70 +
@kaleidoscopefightinglupus Жыл бұрын
Hi E! That is not something that we have come across. We hope someone else comments on your inquiry! - KFL
@liveyourbestself Жыл бұрын
Having lupus and fibromyalgia since I was diagnose at 34 years. I'm 59 years and I'm a level 4 Essentrics Instructor now. I enjoyed your interview with Miranda Esmonde- White explaining Essentrics and how to get out of pain, improve your mobility and a stress relief program helping with Lupus, fibromyalgia, and other conditions. This helped me in a short time but moving slowly, slower pace and gentle exercises. I did stopped all my weight programs and only concentrated on the Essentrics program then I was able to return back to my other activities etc weights and biking . Thanks to Miranda Esmonde-White and Essentrics.
@kaleidoscopefightinglupus Жыл бұрын
Thank you, Peri for the wonderful comments! It is so encouraging to hear that Essentrics has done so much for your lupus and fibromyalgia!
@dianasiegel46912 жыл бұрын
Great job
@antoniojames37982 жыл бұрын
i,m forever grateful to a man called DR.Osaka on KZbin channel who recommended his herbal medicine for me and i got completely cured of Lupus.
@aimeequaifes1753 жыл бұрын
All thanks to Dr.Auchi who I met on KZbin channel. He cure me from Sle Lupus disease with his herbal remedies, I recommend Dr.Auchi on KZbin channel to everyone suffering from Sle Lupus disease 🦠..kzbin.info/door/6tA16t1IlKx1bY93lc2rcg ✅✅✅🙏🙏
@aida72123 жыл бұрын
Happened to me. Grew it back fully in 2yrs and I started losing it again in May this year 2021 🥀🤷🏻♀️My lupus has been very active indeed *DEEP SIGH*
@mariaska78193 жыл бұрын
Put a thumb up before even watching this interview. Have been doing Essentrix workouts for a while now and simply put.....could not do without them !!! Mirranda, thank you from a deepest place of my heart for your wonderful workouts and the kindness and the way you present your teachings.
@babybaby58933 жыл бұрын
I am an Asian lupus patient. Thanks for sharing.
@justindc31243 жыл бұрын
Just came down with something like this, this past year. 50% of scalp balding and falling out and trying to come back white but very very thin.
@shrezz_official3 жыл бұрын
How to be normal or control??
@dream00954543 жыл бұрын
I’m newly diagnosed and this is by far the best information I have come across. It gave me a better understanding of what to expect. Thank you for posting.
@sandyr1643 жыл бұрын
Terrific presentation! Suffer from subcutaneous lupus. The sun and/or stress seems to prompt my rashes.
@irisferguson90103 жыл бұрын
She is amazing❤️
@kaleidoscopefightinglupus3 жыл бұрын
Yes, she is - and spread the word to your friends! Thank you.
@frankbarr96943 жыл бұрын
I am 73 and my husband is 87 we exercise with Miranda 6 days a week. We love Miranda couldn’t live without her 😊.
@joannekirkvaag57294 жыл бұрын
Miranda u have taught me so much about the human body & I've been doing your program 7days a week & I'm 75 &feel like 45 thank you
@kaleidoscopefightinglupus4 жыл бұрын
Thank you Joanne, for your wonderful comments. It is so good to hear how well you are doing, and how much Miranda's programs have helped!
@Mmdmade4 жыл бұрын
It’s shocking how my pain increases all over when I’m more inactive each month during my cycle. More leg, thigh and upper arm pain.
@kaleidoscopefightinglupus4 жыл бұрын
I feel the same way! In some circles, this is called "disuse syndrome" and though it isn't fully understood, it has a bit to do with several of our body systems - sometimes in different parts of the body that seem unrelated. Muscles slightly atrophy with lack of use, our oxygen levels in parts of the body decreases if we don't work our heart, lungs and blood vessels more ... and sometimes our emotional state when inactive can make us feel pain differently. At least there are plenty of resources out there with yoga and other activities that may be of help. We hope you get to feeling better! Thanks for leaving your comment!
@vr94444 жыл бұрын
Great information to pass along to my fibromyalgia friends.
@kaleidoscopefightinglupus4 жыл бұрын
Thanks, V R, for sharing this with anyone who can be helped!!